Community-engaged research in translational science: Innovations to improve health in Appalachia.

Health disparities between Appalachia and the rest of the country are widening. To address this, the Appalachian Translational Research Network (ATRN) organizes an annual ATRN Health Summit. The most recent Summit was held online September 22-23, 2020, and hosted by Wake Forest Clinical and Translational Science Institute in partnership with the Northwest Area Health Education Center. The Summit, titled "Community-Engaged Research in Translational Science: Innovations to Improve Health in Appalachia," brought together a diverse group of 141 stakeholders from communities, academic institutions, and the National Center for Advancing Translational Science (NCATS) to highlight current research, identify innovative approaches to translational science and community-engaged research, develop cross-regional research partnerships, and establish and disseminate priorities for future Appalachian-focused research. The Summit included three plenary presentations and 39 presentations within 12 concurrent breakout sessions. Here, we describe the Summit planning process and implementation, highlight some of the research presented, and outline nine emergent themes to guide future Appalachian-focused research.

Selling the product: Strategies to increase recruitment and retention of Spanish-speaking Latinos in biomedical research.

INTRODUCTION: The Latino population in the US is rapidly growing and faces profound health disparities; however, engagement of Latinos in biomedical research remains low. Our community-based participatory research (CBPR) partnership has recruited 2,083 Spanish-speaking Latinos into 21 studies over 15 years. We sought to identify and describe the strategies we have used to successfully recruit and retain Spanish-speaking Latinos in research. METHODS: We abstracted and analyzed data from archived study notes, progress reports, team meeting minutes, and in-depth interviews conducted annually from CBPR partnership members. We used a nominal group process to refine and prioritize strategies. RESULTS: Overall, 13 recruitment strategies and 12 retention strategies emerged. These strategies relied on the creativity and perseverance of the study team and partners. CONCLUSIONS: It is essential that we develop and disseminate effective recruitment and retention strategies that engage Latinos in biomedical research to reduce health disparities and promote health equity.

Community-Engaged Research as an Approach to Expedite Advances in HIV Prevention, Care, and Treatment: A Call to Action.

Throughout the world, we continue to face profound challenges to reducing the impact of the HIV epidemic. Community-engaged research has emerged as an approach to increase our understanding of HIV and reduce health disparities, increase health equity, and promote community and population health. Our partnership has conducted more than 25 community-engaged research studies in the U.S. and Guatemala, and members have identified nine themes to facilitate community-engaged research and expedite advances in HIV prevention, care, and treatment. These themes include the inclusion of multisectoral partners, trust building and maintenance, the alignment of partner priorities, a can-do attitude, capacity and desire to move beyond service and conduct research, flexibility, power sharing, empowerment, an assets orientation, the shared and timely use of findings, and a stepwise approach. To reduce HIV disparities, community-engaged research is as critical now as ever, and we desperately need to reinvigorate our commitment to and support of it.

Promoting Community and Population Health in Public Health and Medicine: A Stepwise Guide to Initiating and Conducting Community-engaged Research.

Various methods, approaches, and strategies designed to understand and reduce health disparities, increase health equity, and promote community and population health have emerged within public health and medicine. One such approach is community-engaged research. While the literature describing the theory, principles, and rationale underlying community engagement is broad, few models or frameworks exist to guide its implementation. We abstracted, analyzed, and interpreted data from existing project documentation including proposal documents, project-specific logic models, research team and partnership meeting notes, and other materials from 24 funded community-engaged research projects conducted over the past 17 years. We developed a 15-step process designed to guide the community-engaged research process. The process includes steps such as: networking and partnership establishment and expansion; building and maintaining trust; identifying health priorities; conducting background research, prioritizing "what to take on"; building consensus, identifying research goals, and developing research questions; developing a conceptual model; formulating a study design; developing an analysis plan; implementing the study; collecting and analyzing data; reviewing and interpreting results; and disseminating and translating findings broadly through multiple channels. Here, we outline and describe each of these steps.

Identifying Priority Areas for Increasing the Supply of Medication-Assisted Treatments for Opioid Use Disorder: A Geospatial Approach.

BACKGROUND: The opioid epidemic has disproportionately affected several areas across the United States (US), with research indicating that these areas may be underserved and lack access to sufficient medication-assisted treatment (MAT) options. The objective of this study was to introduce a geospatial analytical framework for identifying sub-state priority areas to target federal allocation of MAT training and resources. METHODS: We used a geospatial analytical framework, which integrated multiple substance use measures and layers of geographic information. Measures included estimates of illicit drug dependence and unmet treatment need from the National Survey on Drug Use and Health (NSDUH), opioid-related admissions from the Treatment Episode Data Set: Admissions (TEDs-A), and Drug Enforcement Agency (DEA) waiver practitioner data from the Substance Abuse and Mental Health Services Administration (SAMHSA). Analyses included standard deviation outlier mapping, local indicators of spatial autocorrelation (LISA), and map overlays. RESULTS: We identified twenty-nine opioid dependence priority areas, eleven unmet treatment need priority areas, and seven low MAT capacity priority areas, located across the US, including southeastern Ohio, western Indiana, the District of Columbia, New England, and northern and southern California. CONCLUSIONS: This study identified several areas across the US that have unmet need for MAT. Targeting these areas will allow for the most effective deployment of cost-effective MAT resources to aid the greatest number of patients with opioid use disorders.

Engaged for Change: A Community-Engaged Process for Developing Interventions to Reduce Health Disparities.

The science underlying the development of individual, community, system, and policy interventions designed to reduce health disparities has lagged behind other innovations. Few models, theoretical frameworks, or processes exist to guide intervention development. Our community-engaged research partnership has been developing, implementing, and evaluating efficacious interventions to reduce HIV disparities for over 15 years. Based on our intervention research experiences, we propose a novel 13-step process designed to demystify and guide intervention development. Our intervention development process includes steps such as establishing an intervention team to manage the details of intervention development; assessing community needs, priorities, and assets; generating intervention priorities; evaluating and incorporating theory; developing a conceptual or logic model; crafting activities; honing materials; administering a pilot, noting its process, and gathering feedback from all those involved; and editing the intervention based on what was learned. Here, we outline and describe each of these 13 steps.

Partnering with youth to map their neighborhood environments: a multilayered GIS approach.

Mapping approaches offer great potential for community-based participatory researchers interested in displaying youth perceptions and advocating for change. We describe a multilayered approach for gaining local knowledge of neighborhood environments that engages youths as coresearchers and active knowledge producers. By integrating geographic information systems with environmental audits, an interactive focus group, and sketch mapping, the approach provides a place-based understanding of physical activity resources from the situated experience of youths. Youths report safety and a lack of recreational resources as inhibiting physical activity. Maps reflecting youth perceptions aid policy makers in making place-based improvements for youth neighborhood environments.

Correlates of HAART adherence among immigrant Latinos in the Southeastern United States.

We explored the relationships between sociocultural and psychological constructs and adherence to antiretroviral therapy among predominantly Spanish-speaking immigrant Latinos in the southeastern United States. A cross-sectional clinic-based sample of immigrant Latino men and women participated in an interviewer-administered assessment. Self-reported prevalence of adherence was assessed along with demographic characteristics, acculturation, physician trust, social support, and theory of planned behavior (TPB) constructs: attitude, subjective norm (SN), and perceived behavioral control (PBC). A total of 66 respondents met inclusion criteria. Average age was 38 years old, 74% of respondents were male, 71% heterosexual, and 86% reported being from Mexico or Central America. Prevalence of "complete" adherence (i.e., not missing a single dose) in the past 30 days was 71%. Social support was significantly and inversely associated with adherence, PBC, and attitude. Positive correlates of adherence included attitude, PBC, and employment status. In multivariable analysis, SN and PBC were significantly associated with social support, controlling for acculturation, physician trust, and number of behavioral referents. TPB constructs have utility in explaining ART adherence among immigrant Latinos in the "Deep South." Further research is necessary to understand the complex relationships between social support, attribution processes, and ART adherence outcomes.

A snapshot of how latino heterosexual men promote sexual health within their social networks: process evaluation findings from an efficacious community-level intervention.

Hombres Manteniendo Bienestar y Relaciones Saludables (HoMBReS) was a community-level social network intervention designed to increase sexual health among Latino heterosexual men who were members of a multicounty soccer league. Process data were collected each month during 18 months of intervention implementation from each of 15 trained Latino male lay health advisors (known as Navegantes) to explore the activities that Navegantes conducted to increase condom and HIV testing among their social network members. The Navegantes reported conducting 2,364 activities, for a mean of 8.8 activities per Navegante per month. The most common activity was condom distribution. Most activities were conducted with men; about 2% were conducted with women. Among activities conducted with men, half were conducted with soccer teammates and half with nonteammates. Results suggest that Latino men's social networks can be leveraged to promote sexual health within the community. Innovative methods that reach large numbers of community members are needed given the lack of prevention resources for populations disproportionately impacted by HIV and STDs.

Female sex work within the rural immigrant Latino community in the southeast United States: an exploratory qualitative community-based participatory research study.

BACKGROUND: Little is known about the structure and context of, and the risks encountered in, sex work in the United States. OBJECTIVE: This community-based participatory research (CBPR) study explored female sex work and the feasibility of conducting a larger study of sex work within the immigrant Latino community in North Carolina. METHODS: Twelve abbreviated life story interviews were conducted with Latina women who sold sex, other women who sold sex to Latino men, and Latino men who hired sex workers. Content analysis was used to analyze narrative data. RESULTS: Themes emerged to describe the structure of sex work, motivations to sell and hire sex, and the sexual health-related needs of sex workers. Lessons learned included the ease of recruiting sex workers and clients, the need to develop relationships with controllers and bar owners/managers, and the high compensation costs to reimburse sex workers for participation. CONCLUSIONS: Study findings suggest that it is possible to identify and recruit sex workers and clients and collect formative data within this highly vulnerable and neglected community; the prevention of HIV and STDs is a priority among sex workers, and the need for a larger study to include non-Latino men who report using Latina sex workers, other community insiders (e.g., bartenders), and service providers for Latina sex workers.

The use of prescription medications obtained from non-medical sources among immigrant Latinos in the rural southeastern U.S.

We explored the relationships between behavioral, socio-cultural, and psychological characteristics and the use of prescription medications obtained from non-medical sources among predominantly Spanish-speaking Latinos in the rural southeastern U.S. Respondent-driven sampling (RDS) was used to identify, recruit, and enroll immigrant Latinos to participate in an interviewer-administered assessment. A total of 164 respondents were interviewed in 2009. Average age was 34 years old, 64% of respondents were female, and nearly 85% reported being from Mexico. Unweighted and RDS-weighted prevalence estimates of any non-medical source of prescription medications were 22.6% and 15.1%, respectively. In multivariable modeling, respondents who perceived their documentation status as a barrier to health care and those with higher educational attainment were significantly more likely to report use of non-medical sources. Interventions are needed to increase knowledge of eligibility to sources of medical care and treatment and ensure culturally congruent services for immigrant communities in the U.S.

The association between alcohol use and sexual risk behaviors among African American women across three developmental periods: a review.

BACKGROUND: African American women experience increased rates of sexually transmitted diseases and HIV. The use of alcohol may increase sexual risk behaviors among this population. PURPOSE: This paper provides a review and critique of the literature examining the association between alcohol use and sexual risk behaviors among African American females including a: (a) synthesis of research findings from adolescent, college-aged/early adulthood, and adult samples; (b) methodological critique of the literature; and (c) guidance for future research. METHODS: We reviewed 32 studies examining the association between alcohol use and sexual risk behaviors among African American females across developmental periods. RESULTS: Similar to previous association studies, results suggest that increased use of alcohol is associated with increased sexual risk practices among African American females. Further, even non-abuse levels of drinking among African American females, at all ages, were related to increased sexual risk-taking. CONCLUSIONS: Future studies should seek to recruit samples that more fully reflect the diversity of African American women's experiences across the lifespan. Given the association between alcohol use and/or abuse and the prevalence of STI/HIV-associated risk behaviors and adverse biological outcomes (i.e., STIs, including HIV) among African American females across the lifespan, there is a clear need to develop and evaluate prevention research efforts tailored for this subgroup.

Prevalence estimates of health risk behaviors of immigrant latino men who have sex with men.

PURPOSE: Little is known about the health status of rural immigrant Latino men who have sex with men (MSM). These MSM comprise a subpopulation that tends to remain "hidden" from both researchers and practitioners. This study was designed to estimate the prevalence of tobacco, alcohol, and drug use, and sexual risk behaviors of Latino MSM living in rural North Carolina. METHODS: A community-based participatory research (CBPR) partnership used respondent-driven sampling (RDS) to identify, recruit, and enroll Latino MSM to participate in an interviewer-administered behavioral assessment. RDS-weighted prevalence of risk behaviors was estimated using the RDS Analysis Tool. Data collection occurred in 2008. RESULTS: A total of 190 Latino MSM was reached; the average age was 25.5 years and nearly 80% reported being from Mexico. Prevalence estimates of smoking everyday and past 30-day heavy episodic drinking were 6.5% and 35.0%, respectively. Prevalence estimates of past 12-month marijuana and cocaine use were 56.0% and 27.1%, respectively. Past 3-month prevalence estimates of sex with at least one woman, multiple male partners, and inconsistent condom use were 21.2%, 88.9%, and 54.1%, respectively. CONCLUSIONS: Respondents had low rates of tobacco use and club drug use, and high rates of sexual risk behaviors. Although this study represents an initial step in documenting the health risk behaviors of immigrant Latino MSM who are part of a new trend in Latino immigration to the southeastern United States, a need exists for further research, including longitudinal studies to understand the trajectory of risk behavior among immigrant Latino MSM.

Exploring the use of nonmedical sources of prescription drugs among immigrant Latinos in the rural Southeastern USA.

BACKGROUND: Little is known about access to medicine among immigrant Latinos in the United States (US). This study explored access to, and use of, prescription drugs obtained from nonmedical sources among recently arrived, Spanish-speaking immigrant Latinos in rural North Carolina (NC). METHODS: Our community-based participatory research partnership collected, analyzed, and interpreted data from individual in-depth interviews with Latino community members and rural health service providers. A purposive sample of 30 community members, including traditional healers, religious leaders, transgender Latinos, heterosexual Latino men and women, and Latino gay men, were interviewed to gain emic ("insider") perspectives on use of nonmedical sources of prescription drugs. Six local Latino health service providers also were interviewed to gain etic ("outsider") perspectives on use. RESULTS: Participants described the roles of tiendas (grocers), family, and social networks in accessing treatment advice and prescription drugs. They described health care expectations among immigrants and contingencies for accessing prescription drugs in the US. Prescription medicines (eg, antibiotics, hormones, Viagra, analgesics), injection equipment (eg, syringes), and medical advice were identified as readily available from nonmedical sources. CONCLUSIONS: Increased access to formalized health care and effective health education initiatives are needed to meet the challenges facing immigrant Latinos.

A CBPR partnership increases HIV testing among men who have sex with men (MSM): outcome findings from a pilot test of the CyBER/testing internet intervention.

The Internet has emerged as an important tool for the delivery of health promotion and disease prevention interventions. Our community-based participatory research (CBPR) partnership developed and piloted CyBER/testing, a culturally congruent intervention designed to promote HIV testing among men who have sex with men (MSM) within existing Internet chat rooms. Using a quasi-experimental, single-group study design, cross-sectional data were collected from chat room participants, known as "chatters," at pretest (n = 346) and posttest (n = 315). Extant profile data also were collected to describe the demographics of the online population. The intervention significantly increased self-reported HIV testing among chatters overall, increasing rates from 44.5% at pretest to nearly 60% at posttest (p < .001). Furthermore, chatters who reported having both male and female sexual partners had nearly 6 times the odds of reporting HIV testing at posttest. Findings suggest that chat room-based HIV testing intervention may increase testing among MSM who may be difficult to reach in traditional physical spaces.

A randomized controlled trial of a culturally congruent intervention to increase condom use and HIV testing among heterosexually active immigrant Latino men.

This randomized controlled trial tested the efficacy of an HIV prevention intervention to increase condom use and HIV testing among Spanish-speaking, heterosexually active immigrant Latino men. A community-based participatory research partnership developed the intervention and selected the study design. Following baseline data collection, 142 immigrant Latino men were randomized to the HIV prevention intervention or the cancer education intervention. Three-month follow-up data were collected from 139 participants, for a 98% retention rate. Mean age of participants was 31.6 years and 60% reported being from Mexico. Adjusting for baseline behaviors, relative to their peers in the cancer education comparison, participants in the HIV prevention intervention were more likely to report consistent condom use and receiving an HIV test. Community-based interventions for immigrant Latino men that are built on state of the art prevention science and developed in partnership with community members can greatly enhance preventive behaviors and may reduce HIV infection.

Applying the theory of planned behavior to explore HAART adherence among HIV-positive immigrant Latinos: elicitation interview results.

OBJECTIVE: This study explored influences on intention to adhere to highly active antiretroviral therapy (HAART) among immigrant Latinos living with HIV/AIDS in the southeastern USA. METHODS: Our community-based participatory research (CBPR) partnership completed individual in-depth interviews with 25 immigrant Latinos, based on the theory of planned behavior (TPB), to explore beliefs toward HAART adherence and HIV testing. RESULTS: Participants identified (a) seven outcomes of treatment adherence (e.g., "feeling good" and "controlling the virus"), (b) six groups of persons influencing adherence (e.g., family, partner/spouse), and (c) nine impediments to adherence (e.g., appointment scheduling, side effects of treatment). Fear of deportation, perceived costs of services, and barriers to communication emerged as impediments to both HAART adherence and HIV testing. CONCLUSION: The findings suggest the utility of TPB in identifying factors to enhance HAART adherence among immigrant Latinos. Future research should explore the extent to which these identified TPB components quantitatively influence adherence intention and immunological and virological outcomes. PRACTICE IMPLICATIONS: Culturally congruent interventions for immigrant Latinos may need to focus on facilitators of adherence, influential referent groups, and destigmatizing HIV/AIDS.

Boys must be men, and men must have sex with women: a qualitative CBPR study to explore sexual risk among African American, Latino, and White gay men and MSM.

Men who have sex with men (MSM) continue to be disproportionately affected by HIV and sexually transmitted diseases. This study was designed to explore sexual risk among MSM using community-based participatory research (CBPR). An academic-community partnership conducted nine focus groups with 88 MSM. Participants self-identified as African American/Black (n=28), Hispanic/Latino (n=33), White (n=21), and biracial/ethnic (n=6). The mean age was 27 years (range=18-60 years). Grounded theory was used. Twelve themes related to HIV risk emerged, including low knowledge of HIV and sexually transmitted diseases, particularly among Latino MSM and MSM who use the Internet for sexual networking; stereotyping of African American MSM as sexually "dominant" and Latino MSM as less likely to be HIV infected; and the eroticization of "barebacking." Twelve intervention approaches also were identified, including developing culturally congruent programming using community-identified assets, harnessing social media used by informal networks of MSM, and promoting protection within the context of intimate relationships. A community forum was held to develop recommendations and move these themes to action.

Medications for sexual health available from non-medical sources: a need for increased access to healthcare and education among immigrant Latinos in the rural southeastern USA.

This study documented the types and quality of sexual health medications obtained by immigrant Latinos from non-medical sources. Samples of the medications were purchased from non-medical sources in the rural Southeast by trained native Spanish-speaking "buyers". Medications were screened the presence of active pharmaceutical ingredients using mass spectrometry. Eleven medications were purchased from tiendas and community members. Six were suggested to treat sexually transmitted diseases, one was to treat sexual dysfunction, one was to prevent pregnancy, and two were to assist in male-to-female transgender transition or maintenance. All medications contained the stated active ingredients. Findings suggest that medications are available from non-medical sources and may not be used as indicated. Interventions that target immigrant Latinos within their communities and rely on existing structures may be effective in reducing barriers to medical and healthcare services and increasing the proper use of medications to reduce potential harm.

Reducing sexual risk among Filipina female bar workers: effects of a CBPR-developed structural and network intervention.

The effects of three interventions designed to reduce sexual risk among Filipina female bar workers (FBWs) were compared with each other and with usual care (nonintervention). The interventions were developed iteratively by a community-based participatory research (CBPR) partnership comprising lay community members, organizational representatives (including nongovernmental organizations), and academic researchers from the United States and the Philippines. Peer educators and bar managers from 110 different establishments in three southern regions were recruited and trained to increase knowledge of HIV and of condom use rules and regulations within establishments, as well as to change attitudes about risk reduction, provide HIV and sexually transmitted infection (STI) testing referrals, and build condom use skills among FBWs. Compared with the control community, all three interventions increased HIV and STI testing; however, only FBWs in the combination peer-educator and manager-training intervention significantly increased condom use from baseline to 2-year follow-up. Condom use was significantly associated with higher HIV knowledge, attendance of a prevention class, and being taught how to use condoms properly. Given these findings, research is warranted to further explore and understand various forms of commercial sex work and to test adapted peer-educator and manger-training interventions within HIV epicenters.